Chapter 4: Surgery

We had completed every item on the checklist. Grace did not have a cold, or a fever, or any strange, unidentifiable rash to prevent the surgical team from moving forward. She had also just begun a prophylactic course of antibiotics. Our audiologist at Hopkins, Jill, assured us that every component of Grace’s implantable device had arrived at the Center, and was waiting for her at the hospital, somewhere, with her name on it, in a sterile, sealed case. Grace was exactly eleven months old.
Jason and I woke before dawn, and ate our breakfast before waking her, since she wasn’t allowed to eat anything and it would’ve been unfair to make her watch us eat. I forced myself to chew my food, felt like I was eating cardboard, fighting the Luna Moths flapping madly in my belly. We had packed up everything we needed the night before, and so there was little else to do but put Grace in the car and start to drive.

We headed up to Johns Hopkins as the sun was still cool and low in the sky, and I tried to lock all thoughts out of my head; tried to sleep a little during the hour-long trip to Baltimore. When we arrived, it was so early that for once, we didn’t have to weave through to the upper levels of the parking garage to find a space. We began the staged check-in process. Over the course of at least an hour we moved from one general waiting area to a pediatric one, full of toys. I cringed thinking of the germs blithely bouncing from the hospital floor and sick children to the balls and trucks and blocks and books that Grace kept picking up. We were called up to the desk a few times to answer some questions, or fill out some forms.

An hour passed. Maybe more. I felt foggy and sharp with fear all at once. Finally, they brought us into a pre-op room, into a curtained off little space barely big enough for the three of us. They checked, again, Grace’s weight and height. Asked us more questions. Then, they gave her something to make her drowsy. Dr. Francis came to speak with us. He asked which of us, Jason or me, was going to go into the operating room, to stay with Grace while they administered the general anesthesia. Like the MRI, like the tear-duct probe, I sent Jason in, knowing I wouldn’t hold up too well watching Grace going down into that fathomless sleep.

Although the morning had seemed to drag on, suddenly everything felt like it was moving too fast. Before I had time to really absorb and process what was happening, they took Grace away in a rolling bed, Jason walking along next to her, holding her hand and smiling at her. The moment they went through the door, my fragile composure dissolved, and I collapsed, sobbing, onto the nearest hospital bed.

Would you still be you when you came back out of there?

Would you come back out of there at all?

A nurse came to me and patted my shoulder. She said Grace was going to be fine. Said she was healthy and strong. I waited there on the bed until Jason returned, a little bit shaken himself, I think, but barely visibly so, and hugged me. We went to the waiting room together.

I had brought a massive packet of questionnaires with me, which Jill had asked us fill out. Most of them were for the research study we had agreed to enroll in, which would follow Grace over the course of the next four years, to track her progress as she learned to use her cochlear implant. I had these forms with me to keep me occupied while I waited the interminable hours (they said it would probably take about three) for the surgery.

There was another family going through implant surgery that morning at the hospital. Their son was older, maybe 4, or maybe more like 6 or 7; it was hard to tell because he had many other developmental delays, including, most likely, some form of autism. He was difficult to handle, wild in the hours leading up to the surgery, hard to communicate with. I remember counting myself lucky that day, for the thousandth time, knowing that the only hurdle we were dealing with here was Grace’s deafness; whereas there were countless other for which deafness was just a piece of the overall special needs puzzle.

At some point, while both Grace and the other boy were in surgery, his parents asked me how we were planning on incorporating language with Grace. I told them we were going to essentially use an auditory approach, but that I intended to keep signing with her, at least until she was able to match the signs with the English words. (This approach is called sandwiching, where in the beginning, we would sign the word, then say it, then sign it again. The idea is that she would graduate to reversing the “bread” and the “filling” by transitioning to saying, signing, saying).

They asked me if I had considered cued speech. I had to admit that I didn’t know what that was, and felt a pang of embarrassment and concern. Was this something I was supposed to know about it? They had, in fact, brought a packet of self-teaching cued-speech materials, and showed them to me there in the waiting room. This couple had been told that it was easy to learn, especially compared to sign language, and could really facilitate spoken language acquisition. They explained to me that cued speech is the paired use of spoken language and hand symbols made close to the mouth. The hand symbols represent speech sounds or syllables (also known as phonemes), to help “fill in the blanks” while lip reading, and also help clarify sounds for people who are hard of hearing. My best friend from college, Kim, later told me that when she was in 6th grade, a severely hard of hearing boy moved to her school. He was a cued speech user, and a few students were selected to learn cued speech so that they could help him navigate the classroom. Kim was one of them, and she said she still remembered a lot of the hand symbols. I wondered if I should have done more research on this method, and then told myself to banish the thought. Grace was not even a year old yet; cued speech couldn’t possibly be appropriate for babies, right?

I filled out my forms. One of them was a strange scale asking how many years of Grace’s life I would “give up” for her to be fully hearing (answer: none). There were 10 or so questions of this nature on the form. It was horrible. There was also a family/parental stress questionnaire. A health questionnaire. A questionnaire designed to assess Grace’s overall functioning. And etc.. Over the next several years, I would be asked to fill out these forms many times.

I did my best not to think about what was happening to Grace in the operating room down the hall. Because what was happening in there was pretty scary. While she was under general anesthesia, they shaved a swath of her hair starting from a little way back from her temple, in a strip behind her ear, almost to her neckline. She had a lot of hair by then – very curly and light brown streaked with gold. They made a two-inch incision behind her ear. They inserted the electrode array inside her cochlea. They shaved out a piece of her skull so that they could nestle the receiver, a small disc about the size of a quarter, that also includes the magnet, there. They tested the internal device to be sure all of the electrodes were functioning. Then they stitched her back up.

I was caught completely off guard when Dr. Francis came to say that he had finished. It was faster than I’d imagined it could be. Everything went very well, he said, Grace did great.

We were allowed to go into the post-operative recovery room about thirty minutes later. When we got to her bed, Grace’s head was bandaged, with a princess Leia-looking gauze pad wrapped up on the left side of her head, covering her ear. When she woke, she was drowsy and disoriented, but far less upset than she’d been coming out of the eye-probe. The other little boy, the older one, was not faring as well. It was very upsetting to see and hear him thrashing and screaming – he was terrified and most likely feeling much worse than Grace.

After just an hour, perhaps two, and some juice, they gave us a post-op list of directions (how to clean the wound, how long to keep her bandaged, how to bathe her until things healed a little), and sent us home.

Grace slept in the car. She continued to sleep when we got home, for several more hours. When she woke, around 5 or 6 PM, she was entirely herself again. That was that. She appeared to be so perfectly comfortable I remember thinking it was almost bizarre. She had undergone a pretty major surgery, and yet she seemed to be in no discomfort. Jason took a photograph of her that very same day, sitting on the wood floor of her bedroom. She is wearing a blue and white striped shirt. She has this giant bandage contraption over her ear and around her head. Her head is tilted playfully to one side, and on her face is a huge smile.